hi - I’m not diagnosed and hope it remains that way but I have many symptoms of PD. I do have 3 confirmed autoimmune diseases - one called Sjögren’s which, for me, causes symptoms which are hopefully be just part of my rheumatic disease. But my GP suspects I have overlap with a neurological condition and has referred me to a new neurologist for a second opinion. The neurologist I’ve been seeing to date is very dismissive and says I just have Sjögren’s related small fibre neuropathy and mild autonomic neuropathy and everything else is just “heightened health awareness”.
Meanwhile my gait and balance are increasingly poor and I have a fine resting tremor which started in one toe and, five years on, now affects most of my body. I have poor sense of small, numbness and tingle everywhere, dysmotility, dizziness and vertigo plus facial rigidity and arm hang. Also joint, tendon and muscle pain that go with Rheumatoid Arthritis and Sjögren’s.
I’m not sure that my autoimmune disease(s) explain all these neurological symptoms - particularly the orthostatic tremor.
I suspect D3 deficiency. It is a known factor in Sjogren and autoimmune diseases, and suspected in PD, known in MS… Note final minute of video, the scientists advising the USA committee take 5000 IU per day. Make take weeks to see any effect on Sjogren and other automiimune diseases.
The confusion on the literature about autoimmunity and D3 is because immune celle use D3 proper , not the stuff measured in blood tests which is 25(OH)D3. The immune cells make their own active 1,25(OH)D3 and in autimmune mode the cells stop making it. So we need lots of supplement to break through that block and switch the cells out of autoimmune mode. That is partly why D3 is not ( yet) regarded as a key factor in PD.
I take 10,000 IU pd , same as used to slow and reverse multiple sclerosis.
Thanks for this. I have been taking prescribed AdCal D3 for 4 years now - one a day. Not sure how much D3 they contain though as it doesn’t say on the box. Probably not enough but my rheumatologist requested that I do not take additional D3 as she says this can cause other problems. I do know that I was at the lowest end of insufficient (24) when I had myself tested five years ago. Within two weeks of starting the AdCal D3 a very uncharacteristic depression lifted and my Rheumatoid Arthrltis pain has never fully returned. I plan to ask my rheumatingist if I can be repeat tested next time I see her in 3 weeks time.
Ps I think I forget to say that I am hypothyroid as well (Hashimoto’s). I’m really hoping that the neurologist I see for second opinion will refer me for DAT scan. I have had two MRIs of brain - both show white matter that has so far not progressed and is in keeping with Sjögren’s. Also had a lumbar puncture 3 years ago which showed paired oligloconal bands - non specific sign of a systemic process occurring. I think there may be some link between Sjögren’s and PD?
24nmol/L is very low, not surprised you were depressed.
USA criteria indicate 100 to 120nmol/L is correct. Needs about 2000 Iu pd to get there. The 200IU in Adcal wont do it. Low D3 suppelement has most effect in pts with low serum D3,
Measure it yourself through the post: City Assays Birmingham. Saves waiting for another appointment.
Low D3 and PD are linked.D3 controls genes for most of the neurones’ anti-oxidant enzymes and for switching off inflammation
I would ask how to raise serum level to 120 nmol/L without getting excessive calcium abosrbtion from gut. GP can monitor blood calcium routinely.
Yes, D3 common to both PD and Sjorgren. … and a whole host of other pathologies - check out vitaminDwiki.com
100 to 120 is the physiological level.
To reduce autoimmune attack the level has to be higher, around 200nmol/L. This is what is sued for MS - read the Wahls Protocol chapter on supplements.
I’d except Sjogren to be similar. The reson is the immune cells can take on two forms: in autoimmune attack mode ( Th1 and M1 form) or asupprotive benficial mode(Th2 and M2). D3 will switch mode 1 to mode 2.
But these cells make their won 1,25OHD3 starting with D3. They do not use ciculating 25OHD3. Now, in attack mode1 the cells switch off their own synthesis of 1,25OHD3 and become lokced onmode 1. Until a really high blood levle of D breaks through the switch. If you want to read further in M1 mode NFkappaB is produced in the cells and this kills D3 hydroxylation…
I take 10,000IU per day for PD. It is an experiment that I expect to work. The only trial, in Japan, used 1200IU D3, a miserbale dose, for only three months. I also take mitochodrial suporting agents, all endogenous bichemicals. Same as in the Wahls Protocol. I raised the D3 does slowly, first 2000IU for three months then measured serum (turned out at 100nmol/L), then 6000IU for three months ( serum 170nmol/L), now on 10,000 , one month to go to measuring. My psoriasis, an autoimmune skin condition, became less aggressive as serum level was rising towards 170nmol/l…so 2000IU did not change it, 6000 did.